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VIEW FROM THE OTHER SIDE OF THE STETHOSCOPE: The “H” Word

Author Information

Wendy S. Harpham, MD is an internist, cancer survivor, award-winning author, and mother of three. Her books include “Diagnosis: Cancer,” “After Cancer,” “When a Parent has Cancer,” (selected as the #1 Consumer Health Book of 2005 by American Journal of Nursing), and, most recently, “Happiness in a Storm.” She lectures to professional and lay audiences on a wide range of issues centering around “Healthy Survivorship,” including recovery and late effects after cancer, raising children when a parent has cancer, clinical trials, and finding happiness in hard times. Further information about Dr. Harpham and her work is available at www.wendyharpham.com.

“Dr. Katz. Just the person I was hoping to see.” After one last little push to line up her patient's chart flush with the others, Dr. Katz cheerfully turns to her young colleague. “Ah, Dr. Solor. Just the person I was hoping to see. Nice pick-up this morning on Mr. Mavel's hyperparathyroidism.”

Dr. Solor's seriousness clashes with her compliment and the colorful decorations at the nursing station. “I've got a dilemma and could use your advice.”

Pointing to two empty chairs, Dr. Katz lowers herself into the nearer one as gravity undoes her smile. This isn't the first time he's sought her out when troubled by a situation with a patient.

“Do you remember the time you and I talked about…” Dr. Solor hesitates, searching for the phrase, “How did you put it? ‘leaving space' for patients to find hope?”

“Sure, I remember. We were discussing our mutual patient who is in remission but has a high risk of recurrence, right?”

He nods. “I remember your saying, ‘Patients need to find a balance of hope and acceptance that works well for them.’”

She uh-hums her affirmation.

“I have another patient who, when he first came to me, told me he needed a doctor who wouldn't give up hope, no matter how bleak the situation. Well, I saw him in the clinic yesterday to discuss his recent scan results. Unfortunately, his cancer marches on no matter what I hit it with. I'm out of treatment options.”

“You're at a turning point.”

“Yes. I won't prescribe another treatment just so he can feel hopeful. I can't do that.”

“So, the problem is…?”

“He needs hospice.”

“What happened when you brought it up?”

“I…uh…didn't,” Dr. Solor responds, shifting in his seat. “During his last hospitalization, his wife approached me alone at the nursing station. She sensed his latest chemo wasn't working and warned me, ‘Don't even mention the ‘H' word to him.'”

“You're right. It's a delicate undertaking to shift from care intended to prolong life to care focused primarily on quality of life.”

“…and to do it without destroying hope. That's my dilemma.”

“A few months ago you offered your patient chemo—with all its associated risks and discomforts—as the most hopeful approach. Can you offer him hospice as the most hopeful approach now?”

“But the two situations aren't comparable. Prescribing chemotherapy furthered our shared mission: to help the patient live. I feel as if referring him to hospice abandons our mission. I would no longer be helping him live; I'd be helping him…”

“live,” Dr. Katz interrupts, drowning out Dr. Solor's conclusion.

“Well, maybe, figuratively speaking. But my patient wants to live literally. Without any hope of recovery, how could he hope to live literally or figuratively?

“In other words, you're saying that since accepting hospice means facing the likelihood of death and letting go of the hopes nurtured by cancer treatment, a referral to hospice will necessarily extinguish all his hope?”

“Won't it?”

“We are treading on thorny territory.” Dr. Katz thinks for a moment before continuing. “Even when recommending hospice, I think you can leave space for hope.”

“How? I'd essentially be telling him I expect him to die within six months. What hope could he—or I—possibly have?”

“For a new treatment to become available? For the prognosis to be wrong?” After another brief silence, Dr. Katz continues, “It's easy to get tripped up by thinking of hope too narrowly. Along with hope for recovery, patients also hope we'll keep them comfortable and help them live better.”

“Many patients, maybe most patients, nurture other hopes and discover new hopes as their hope for recovery fades. I never cease to marvel over patients' ability to adapt to changing circumstances and to continually find a new balance of hope and acceptance that helps them live.”

Throughout survivorship, skilled attention to comfort (emotional and spiritual, as well as physical) helps patients live as fully as possible each day. Ideally, palliative care—attention to quality of life—begins with the patient's original diagnosis, continues throughout treatment, and then, should anti-cancer therapies fail, continues to the patient's last breath. Physicians who fear the “H” word unwittingly deny patients the services of caregivers who can help patients prepare for and deal with dying.

Hospice and hope are not mutually exclusive. Recovery is possible. Some patients do unexpectedly well when the toxicity of chemotherapy or radiation is removed. Not uncommonly, patients live longer than predicted. On occasion—granted, it is rare—a patient inexplicably recovers, or a new treatment becomes available and the patient is discharged from hospice to resume cancer-directed treatment.

Far more often and equally important, hospice nurtures patients' hope as they approach the sunset of their survivorship. This hope takes a variety of forms: hope for being at home where they are more in control of their lives, for dignity and serenity, for meaningful interchange with loved ones, and for whatever other hopes grow large as their lives wind down. As the ancient Roman philosopher Cicero said, “While there's life, there's hope.”

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